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International Day for Persons with Disabilities- Is there anything to celebrate?

It has been reported that households with a differently-abled member(s) tend to face extreme poverty; including food insecurity, poor housing and sanitation as well as inadequate access to healthcare.

Ageing is often coupled with physical, hearing or sight disabilities. With rapidly ageing populations across many developing and developed nations, it is even more imperative that Persons with Disabilities (PWD) are put high on the global agenda. It is estimated that over one billion people globally experience some form of a disability. It is approximated that 15 percent of the African population are differently-abled and in the South African (SA) context close to 3 million people are differently-abled. There are however major limitations related to the collection and reporting of data on PWD; more accurate statistics are urgently required to inform policies as well as assist with monitoring and evaluation of any progress.

A recent report by the World Health Organisation (WHO) indicates that inaccessible buildings, transport, stigma, lack of technology and poor health care or rehabilitation services are some of the major challenges faced by PWD. In line with the Alma Ata declaration, Universal Health Coverage (UHC) should ensure access to quality healthcare for all. Most research on UHC as well as the policy agenda of UHC is not cognisant of vulnerable populations such as PWD and perhaps this is an issue to take note of on UHC Day (12 December).

The improvement of lives of PWD has been included in a number of Sustainable Development Goals (SDGs), aimed at addressing education, growth, employment, inequality and accessibility to human settlements. It is concerning that SDG, Goal 3 (ensure healthy lives and promote well-being for all at all ages) makes no particular reference to PWD. In a number of contexts including SA many policies and frameworks have been geared towards improving the lives of PWD. However, the reality is that implementation has been slow or almost non-existent. To illustrate this, below are a number of hypothesised practical scenarios in the SA health context to highlight access barriers and quality of care issues which PWD might face;

Scenario 1: A first time patient may be unable to fill in the necessary forms due to a medical condition such as focal dystonia or muscular dystrophy. This may be greeted by a lack of understanding of staff or negative staff attitudes, no one willing to assist and this might lead to denial of care at the first point of entry in a health system.

Scenario 2: In rural areas, health facilities lack the necessary infrastructure, a patient who uses a wheelchair may be unable to enter a health facility if there are no ramps. Other difficulties might be difficulty in accessing all areas of the facility or no provision made for wheelchair users to wait in patient lines.

Scenario 3: A visually impaired person cannot make use of transport as he/ she is unable to see the signs for public transport. Though if a visually impaired person is able to be transported to a health facility, other barriers would be needing someone to accompany them to receive care as they will be unable to see signs in the facility, for example signage for entry, or consultation. The script or consent form they are given is not tailored to ensure that a visually impaired person can read, understand or sign, which raises major ethical issues in healthcare settings. Pharmaceutical companies should be aware that visually impaired individuals need medication to be labelled in large letters or in braille, presently medications are not labelled in a favourable manner and one would not be able to distinguish between medication boxes/ containers or be able to read the dosage.

Scenario 4: An individual with cerebral palsy in an urban area might know where to access transport, though due to being unemployed cannot afford public transport and would walk long distances causing major discomfort to access a facility. Another barrier could be inaudible speech and one not being able to converse with healthcare personnel.

Scenario 5: A hearing impaired individual might face communication barriers with healthcare personnel, especially during the consultation with a doctor/ nurse/ pharmacist and would be reliant on having another person present to relay information.

These scenarios emphasise the need to understand what is needed at the implementation level. It is vital that PWD are consulted during both policy formulation and implementation stages. While the annual 3rd of December International Person with Disabilities Day certainly raises awareness, there is nothing to be celebrated until real change and improvement is brought to the forefront particularly in respect to addressing access barriers and improving quality of healthcare. Research and further awareness across country contexts is urgently needed in this regard, for then only will the principles of UHC be adequately achieved. Moreover, it is imperative that PWD and specific targets be incorporated into SDG Goal 3.


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